09 – Strengthening Information Systems and Linkages to Care

Pre-treatment loss to follow-up (PTLFU) refers to the situation in which bacteriologically-confirmed TB patients are not reported to the NTP as having initiated treatment. (This may include patients who have died.) The causes of PTLFU are often systemic and may include the following scenarios:

• Patients start “shopping” around for care at private clinics after a diagnosis is provided to them in the public sector;
• Patients are diagnosed at an NTP clinic but referred to another clinic because of geography-based treatment eligibility protocols; patients are then lost between the two institutions;
• Patients provide specimens for laboratory examination, but do not return to the health facility for confirmation of diagnosis.

PTLFU is a key failure in the TB patient care pathway. Moreover, because it signifies delays in care, PTLFU is associated with significant mortality (9). The rates of PTLFU can range from 4% to 38% in different settings (10). NTPs’ monitoring and evaluation (M&E) systems often do not cover the entire patient care process from screening to treatment outcome. An effective information system can potentially address this challenge. PTLFU can be systematically captured in national reporting systems by using UPIs from the point of initial screening (or point of diagnosis) so that laboratory and treatment records can be linked for every patient. This direct linkage will permit active tracing of patients lost to follow-up.

Programmes and projects have utilized a wide range of interventions to minimize PTLFU, some of which can be enabled and informed by the use of electronic systems. Such interventions have included SMS reminders to patients to present at treatment initiation sites, counselling, referrals, “case management support” or “patient escort support” (e.g. programme staff walk or drive a confirmed patient to a treatment site), enablers (e.g. transport money), improved turnaround times for lab reporting, on-site GeneXpert testing, simplified testing algorithms and improved access to diagnostic facilities.

In Pakistan, the Zero TB Initiative in Karachi and Peshawar used a dedicated call centre as a patient registration and follow-up system from the time of initial sputum specimen submission or chest X-ray. An online electronic medical record system helped the call centre to capture data on individuals who submitted sputum, those who tested positive for TB, and those who initiated treatment. Those individuals who had not started on treatment were traced by phone calls; if there was no response, a programme staff member attempted a home visit. In India, World Health Partners served as a private provider interface agency in Patna by engaging with private rural health care practitioners and offering them mobile phone adherence tracking, alerts and reminders. This was coupled with incentives and a web-based electronic recording system that facilitated various case-management tasks for the providers (11).  

It is important to assign accountability for PTLFU not just to programme field staff, but also to a dedicated M&E team led by a senior team leader who can keep close tabs on weekly (or even monthly) loss to follow-up rates. By the time quarterly reporting cycles are completed, it may be too late to bring patients onto treatment. However, it is important to use incentives and administrative pressures with care when attempting to resolve PTLFU, as this can result in falsification of data in extreme circumstances.